The Project Rheum

Healthy with Rheumatoid Arthritis

My Story

I was diagnosed with Juvenile Rheumatoid Arthritis (now known as Juvenile Idiopathic Arthritis) 30 years ago at the age of 15. The typical symptoms of pain and inflammation started shortly after I recovered from a severe gastrointestinal flu. There is still no doubt in my mind that the flu that kept me bed-ridden with horrendous abdominal cramps for two weeks was what ignited my immune system to rage battle against the very body it was designed to protect. Three weeks after I recovered from that flu, I came off a mountain after a day of skiing and my left knee was grossly swollen. The pain and swelling wouldn’t subside so I went to see my family doctor who immediately diagnosed me.

For the remainder of high school my symptoms were limited to a tender right wrist and swollen knees. It wasn’t standard medical practice 30 years ago for doctors to recommend the fighting drugs that are prescribed today at RA’s onset. The non-steroidal anti-inflammatory Naproxen was the first line of defense for me.

It was the summer of going into my second year of university that I truly understood how disabling joint inflammation can be. Overnight, my knees, ankles, and elbows were constricted with fluid. I couldn’t lift my hands above my head. My jaw, neck, and hips were frozen, and my knees were the size of footballs. I suddenly couldn’t move, although my world demanded that I did. My summer job became an overnight insurmountable obstacle. To move through the office I grasped onto desk corners and walls as I walked, but nothing could compensate for the god-given birthright to fluidity and equilibrium. I tried a cane, then crutches, even new, more comfortable shoes. No external device could quell the fire, ease the pain, give me my well-behaved body back. My rheumatologist put me on a pulse of high-dose prednisone, which took care of the immediate crisis but made my heart race, my ears ring, and my nights restless without sleep. Because of the negative side effects of steroids, I was advised to taper them slowly and decrease the dose as low as I could without flaring too much. I got down to an everyday maintenance dose of 10 milligrams, although the dosage didn’t hold me well. My rheumatologist then began prescribing various other medications in an effort to help reduce my symptoms. I went through prescription after prescription but nothing worked.

As I tried to come to terms with my JRA, my health began to unravel in other ways. I developed secondary conditions, like ulcerative colitis, endometriosis, severe anemia, and osteoporosis. My life became increasingly complicated. I was in and out of hospital for surgeries and investigative medical procedures. I was suddenly severely underweight, unable to exceed 100 pounds at my height of 5’7”. I developed a moon face typical of prednisone users. I couldn’t concentrate on anything related to school so I drove one morning to the registrar’s office and quit. I started losing my hair, waking up each morning to find clumps of it on my pillowcase. My boyfriend of four years dumped me for an athletic, healthy girl. I spent a lot of time immobilized in bed, listening to the comings and goings of our busy home and watching my three sisters effortlessly carve out unique paths in the world. I felt increasingly powerless and deficient. Why couldn’t I reach down to tie my own shoelaces? What had I done to deserve such fate? In a desperate effort to feel normal again I abruptly stopped taking prednisone but within 24 hours I experienced such an adrenal crash that I couldn’t stand on my own and breathing felt like too much work. I was diagnosed with prednisone-induced adrenal deficiency and advised to stay on the medication until a better drug regime was found. In an effort to help me recover from the crash my parents took me, along with my sisters, away during Christmas break to a small but idyllic cabin situated deep in the woods of an island off our city’s coastline. I eventually caught my breath there as I lay in bed looking out the window night after night at the stars and the moon and the beautifully-haunting tree silhouettes. It was there that I began to feel in my heart a brewing determination. I wanted more than ever to get on with the business of life.

I enrolled in school again, and with my mom’s help by picking me up between classes and driving me to the next lecture I was able to inch my way through a four-year degree in creative writing. It took seven years.

After graduating I took a job at a book publishing firm where I worked hard and earned my way to the position of copy writer, copy editor, and production coordinator. During my many years there, my health was constantly vying for attention by way of agony, exhaustion, and medication-related side-effects like nausea. I felt like I was rushing through each day despite pain so I could get home to my rented apartment suite and into bed as fast as I could. I didn’t have the stamina after work to cook, so I ordered in or ate pre-made frozen meals heated in the microwave. I slept my weekends away in an attempt to store up enough energy to be able to perform at work the following week. There were only two things that got me out of bed each morning: prednisone and sheer determination. During those years I took part in various drug trials, all of which failed miserably. As I aged, my official diagnosis was changed from JRA to rheumatoid arthritis, and my rheumatologist labelled my condition “stubborn.” I developed high blood pressure, irregular tachycardia, menorrhagia, and severe hip pain. I put off replacement surgery year after year for three years because I didn’t want to compromise my career. During an appointment with my orthopedic surgeon, however, he showed me on the x-rays the severe deterioration of my hip joint. He shook his head in disbelief at my ability to still walk. Staring at those x-rays as I sat beside my doctor I could suddenly see my body clearly. Was putting my health on the back burner worth it? What was I accomplishing in my life by ignoring my own health in order to produce books?

That year I committed to the surgery and never looked back. I quit my job, moved to an island close to the one my family had stayed at years before, and I began to dedicate my life to the study of wellness. I wasn’t so much interested in studying rheumatoid arthritis as I was in investigating the anatomy of health. What makes someone healthy? Can we make ourselves better by what we eat, drink, do, and think? If we can calm our body in every sense, can we arrest the progression of illness?

I think most definitely we can!

Sometimes I can’t believe I’ve been living on my little island for 12 years. I was married here nine years ago and we live out our lives simply and happily by the sea with our cherished Irish-Terrier, Lola, and our organic fruit and veggie garden. For me, everyday is about making healthy choices that are based on the knowledge I’ve gained from both personal experience and from health experts who understand the science behind what it takes to get well and stay well. Join me here to discover how to infuse good health into our lives, despite RA. Such an infusion can only help to tip the scales back to total health.

Three cheers to that!

Zuzu

6 thoughts on “My Story

  1. You are an inspiration. I have seen the gracious way you live with your RA, and now I can appreciate your experience as you use your skill and insight to share with others. The photographs are exquisite and your prose is clear and captivating.

  2. Thank you for telling your inspiring story and providing well-informed and wonderfully readable nutrition advice that’s good for any and everyone. Off to do some hunting and gathering for a vegetable soup recipe you gave me years ago that’s become one of my favourite meals.

  3. I am just in awe of your story. When I met you today I had simply no idea of what your past was all about. First of all I thought you were years younger as you look so fresh and healthy. You have a wonderful positive aura about you and you are inspiring. I feel a bit embarrassed to say this is the first blog I’ve followed or understood why one would want to follow a blog, but now I look forward to following yours. I am so happy to have met you and I know you are a huge inspiration for anyone suffering from RA or inflammation challenges. I wish you the very best in life and I am already looking forward to trying some of your recipes. You’ve gained another fan. Warm regards, Leslie

    • Thank you for the wonderful comments, Leslie! I so enjoyed meeting you today and I’m hugely excited for you as you embark on your education in nutrition this fall. What great adventures there are for you on the horizon! I can’t wait to come into the store again so we can continue our talk about the positive impact food has on the body. Cheers.

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